The Worst Day of My Life

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What was the worst day of your life? Everybody has one. Mine was 10 years ago today: October 15, 2004. I was in the first year of my marriage, practically a newlywed, pregnant with my first child. A boy. A baby boy I’d dreamed of having for years.

And then I had the 20-week ultrasound. “There’s something wrong with your baby’s heart.” More tests. “It’s a heart defect, and it’s a bad one.” The doctor who delivered the blow advised me to terminate. He led me to believe that my baby had no chance. Nobody has every said anything more horrifying to me. Ever. Not before. Not since.

Every year on this date I think about that time. And I’m thankful that it was the worst day. Because once that day passed, I found hope. And my baby did not die. That’s him in the picture above, squashed underneath his younger brother and being photobombed by our family cat.

So yeah, October 15,2004 sucked. But today didn’t, and I really hope that date lives on as the worst day in my life forever. If it does, then I’m a lucky lady.

An Update on the Heart Child

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Friends and family know that the heart child, Corey, is nine years old now and doing remarkably well, but for new people surfing in to “meet” my little source of inspiration, I thought it might be time to write an update.

Corey’s in fourth grade, five years post-Fontan, and in the 62nd percentile for height, 50th for weight. He’s huge! He eats more food than I do at any one sitting. When he’s a teenager, I’ll have to hit Costco and buy six chickens at a time. And not to brag, but he’s wicked smart. Ridiculously smart. Okay, so I mean to brag. He’s so smart! Let me give you some examples of his cerebral prowess.

1. He watched videos on youtube and taught himself to solve the Rubik’s Cube. He can now solve any traditional 3×3 Rubik’s Cube in a matter of mere minutes.

2. When he took the state assessment test in his elementary school, his results in math were off the charts. He scored well above not only the kids in his school, but all the kids in the county AND the state.

3. His last report card was straight As.

4. He has an affinity for cards, picking up new games and winning at them so quickly that I am afraid to expose him to his Uncle Dave, who was once a professional poker player, because if Corey picks up poker like he picks up everything else, look out! We’ll be mortgaging the house to pay off his gambling debts before he’s 10. Or buying a vacation house in the Keys. Could go either way.

5. He beats me at Monopoly regularly, and I don’t let him win.

That’s enough about Corey’s brain. It’s a great relief, I must say, for his parents. When he was diagnosed with a single ventricle in utero, we wondered if he would be below average. Or well below average. Or worse. When our PC said, “If he is meant to be an above-average student, he will be, regardless of his heart,” he was right!

Corey also plays baseball. And well. Soccer is out – too much running – but he’s got rockin’ hand/eye coordination, and those brains of his come in handy. You need brains to play baseball. Luckily I don’t need brains to watch him play. I just need beer and peanuts. Just kidding. About the peanuts. These kids might have a nut allergy! I would never expose them to peanuts. Ahem.

Right now Corey (and his heart-healthy younger brother) is all excited for the holidays. We will be bringing out our Halloween decorations today! And I am feeling the boys’ excitement. The 10th anniversary of Corey’s diagnosis is this month, and when that day passes, and I mark it (as I always do), it will be with a giant smile on my face as I watch my amazing heart child play with our Halloween toys and talk non-stop about wearing his costume, trick-or-treating, marching in the holiday parade, going to Aunt Vicki’s for Thanksgiving, seeing Super Magic Elf (or Elf on the Shelf) again, what he’s going to write in his letter to Santa, when we’re going to get the Christmas tree, whether or not Mommy is going to forget the carrots for the reindeer again……..

Top 10 Sources of Stress

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That’s the face I’m making on the inside right now, because I’m a giant ball of stress lately. If I were wound any tighter, I might just explode. My heart rhythm is all out of whack, I’m grouchy, I’m not sleeping well, and really I’m just an all around good-time girl these days. Not. If I ask you to lunch you might want to have an excuse ready.

Why am I such a stress ball, you ask? The kids just started a new school year. And I just started a new job. Which I am sure will be wonderful and I will love. Eventually. Once I get used to it and stop freaking out. Which could really happen anytime now, thank you very much. I subbed last year, and I loved every day of it. But now I’m not a sub. I’m it. And I want to do right by these kids.

I’m teaching preschool, you see. Two-year-olds. 30 of them. And they are wickedly cute. But they also poop and scream at me because I’m some weird lady that their moms have dumped them off with for reasons unbeknownst to them. Here’s the sentence that I’ve said more than any other over the past 3 days, “Mommy will come back for you, I promise, but right now, let’s look at this Mickey Mouse toy!” Then they look at me like I’ve got three heads until they see that I’m not lying – I really have a Mickey Mouse toy and they can really play with it if they can stop crying for 3 minutes.

New job stress. I know that’s what this is. But somehow it’s not making my ability to deal with the stress any easier. And to be fair, two of my initial classes were like a dream – nobody cried, and everyone seemed very happy. I’m hoping that, as time passes and I get to know the kids and they get to know me, everything will even out and be all right again. Because what’s more important than making a positive difference in the life of a child?

And here’s that stress list I promised you. According the non-profit organization HCCUA, these are the top 10 sources of stress for humans. Right now I’m rocking number 5 and number 8 (although Corey is doing remarkably well, the fear of what the future holds never really leaves me):

1. Death of a Loved One- Even if a death is anticipated, such as with a prolonged illness, those people who loved the individual can experience extreme stress.

2. Childhood Trauma- People who are sexually, psychologically, and/or physically abused, or who have been abandoned while young, may carry these stresses into adulthood.

3. Divorce- All the aspects of a divorce, from personal to financial to loss of family and friends, contribute to these forms of stress.

4. Finances- Although this is easily understood as a stress factor, bankruptcy and mortgage foreclosures seem to increase the human stress levels even more.

5. Employment- Those who are employed may find their work, hours or co-workers cause stress, while those who are not employed find their circumstances without income and the job searching process also cause stress.

6. Poor Health- The medical crisis or being ill, escalating medical costs, terminal illness, becoming incapacitated, not having medical insurance, and not having access to medical services all contribute to causing stress.

7. Personal Relationships- If there are troubling issues with family, extended family, partnerships, friends, children, or lovers, these are all large contributors to stress levels.

8. Chronically Ill Child- The parents, family, and friends of chronically ill children all experience stresses caused from circumstances surrounding the child’s illness, and the personal and financial obligations derived from the chronic illness.

9. Pregnancy- Infertility, lack of a relationship when wanting children, adoption, premature births, unplanned and/or unwanted pregnancies, complications during pregnancy, and pregnancies caused from sexual abuse and rape are high human stressors.

10. Danger and Fear- People who live in war zones, crime infested areas, and in isolated communities can experience daily stressors that accumulate over time, while others who are victims of personally invasive crimes, such as cyber bullying and identity theft, are also at risk for high stress levels.

My Book, Raising a Heart Child: A Parent’s Guide to Congenital Heart Defects

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….has been published! When Corey was diagnosed with a congenital heart defect at 20-weeks gestation, I yearned for a book like this one. I wanted to know what his journey would be like, in as much detail as possible, from the moment of diagnosis through every test, every treatment, every appointment with with doctors/dentists/therapists. I wrote this book for everyone who has been touched by a child with CHD. Parents, grandparents, aunts, uncles, friends – all of us. May it offer help, hope, information, and comfort to those who need it.

Here are the links to all the distributors carrying my book. Click on any of them to see the book or read free samples:

Amazon, AmazonUK, Barnes & Noble, Apple iTunes, Oyster, Kobo, Blio, FlipKart, Smashwords

  Continue reading

Vegas Baby!

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Last week we went to Las Vegas to visit my in-laws. And may I just say, what a great place for my in-laws to live! I mean really – you can’t pick where your family lives, but if you could, I think I’d go with minutes off of the Vegas strip. The whole week was a blast thanks to not only the location but also the fabulous hosting abilities of my husband’s father and his wife. Many thanks to them!

The trip began with a 5-hour flight with Team Crazy. Enough said about that. We spent a leisurely Saturday afternoon once we arrived, and then we kicked it up a notch with crab picking on Sunday. Crab picking in the desert – I’m still not over the thrill of that. And the crabs were fantastic. But they’d have to be, right? Because the crabs you get are the ones hardy enough to survive the flight. Add some Fat Tire, and now you’re cooking with gas. I love crab picking – it’s such a fun social event. Corey is all in, too – he calmly and expertly picked 3 extra-large crabs all by himself.

Monday was a day at the water park. Wet ‘N Wild. The ladies begged off of that event – can’t imagine why when there are giant water slides which mimic such fun pastimes as being flushed down a giant toilet – and went shopping. Ah, shopping. The ladies came home with full shopping bags. The boys came home bronze-skinned, blonde-haired, and totally zonked out from their day in the water and sun. They were still zombies the next morning – score!

We hit the Mac King Comedy/Magic Show with the kids on Tuesday afternoon, and it was a riot! Damian found a super deal on the net, and we scored tickets (normally $40 each plus a 1 drink minimum) for $15 apiece, including a drink voucher. Sweet! My father-in-law spotted the usher a $10, and we got seats in the front row. Out of all of us, Corey really wanted to go on stage. Damian really did not. Guess who went up? That’s right! My husband. Still, he was a good sport and played along. Mac King did some funny card tricks with him, stole his watch, and offered him a Budweiser bottle (which he later signed) – it was all good fun. The boys certainly loved seeing their daddy up on the stage.

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Above is a shot of us on our way to Jersey Boys later that night, which I loved. We were NOT the demographic. In case you’re not familiar with the play, it’s all about Frankie Valli when he was coming up – his time with The Four Seasons, his history with his family, etc. I learned a lot, recognized all the songs, but what I was most blown away by was the sheer vocal capability of the kid who play Frankie. He literally had a guitar, a bass, a keyboard, a drum set, and a horn section consisting of SIX guys behind him, and he was blowing them all away. Amazing.

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This is a shot of the Bellagio atrium at night. I am always amazed by the beauty and creativity of the floral arrangements and sculptures. We wandered about in there for a bit after Jersey Boys, then we stopped in Sensei for a lobster sushi roll and a glass of malbec. And people watching. Always a treat to people watch in Vegas. For me, anywhere really. I’m like that.

The next night was our night of freedom. Woot woot! Every year the grandparents graciously offer to watch the boys for 24 hours, and Damian and I take full advantage of this opportunity. This year we stayed in the Venetian. I’d never stayed there before, and it’s around the location we like best on the strip, so I was excited. Damian used a trick he’d learned on the net (perfectly legal, of course) to score us some upgrades, including a pool/strip view on a higher floor, as well as no extra resort/early check-in fees. A round of applause for my brilliant husband. This is the view from our room.

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That night we went to dinner at Nobu, the famous Japanese place on the strip in the Hard Rock Hotel. It was FABULOUS. WARNING: I am about to describe this meal in enough detail to put you into a food coma right in front of your computer. If that’s not your thing, skip ahead to the next paragraph. So, we did the chef’s tasting menu with a bottle of pinot noir, and everything I ate was like nothing I’d ever had before. We started with a seaweed wrap that was shaped like a cone and filled with sprouts, carrots, avocado, and a heavenly ginger/peanut sauce. Next was a sashimi paste in the shape of a disc served with wasabi/scallions/caviar over a bed of banana leaves with a Japanese pear as a palate cleanser. After that, a plate of sashimi in a long thin dish, from left to right a piece of ahi tuna, a piece of mackerel, a piece of fish that I can’t remember (but it was wildly presented with the skin on), and then a mini sponge cake as a palate cleanser. Onward to 3 pieces of sashimi served sideways as the outside of a tower, in the center was a salad with a creamy cilantro sauce – also amazing. Next it was 3 pieces of yellowtail served in a bright lemon sauce with ginger and scallions (maybe my favorite cold dish). On to the hot dishes – first there was a hot piece of buttery melt-in-your-mouth sea bass with a bbq/teriaki sauce – heavenly good. Then a plate of super-thin rare kobi beef served sizzling on a plate of diced peppers & onions. I was ready to wave my white flag, but then out came a bowl of miso soup with a giant scallop in it. And finally – finally! – dessert – which was a chocolate lava cake topped with white chocolate and served in a wooden box with green-tea iced cream next to it. Fantastic fantastic fantastic!

The next morning brought our annual breakfast visit to Mon Ami Gabi in the Paris Hotel. We sat right on the strip, where the people-watching before 10 AM is killer, and we enjoyed wonderful french food and strong coffee. Damian had waffles and strawberries, and I had a ratatouille omelet with fruit, fresh toast and home-made jam. As we watched the people stroll by on the strip, at first we thought we weren’t going to see anything interesting. The weather was mild, and a lot of joggers were out and about. What’s up with these health nuts on the strip? I mean, really. Lots of tourists with coffee cups passed by and people-watched US as we ate! What’s up with that?

But then our luck started to change. We saw a dude double fisting two open bottles of Budweiser, some guys who’d clearly been up all night and were strolling by with beer cans, a guy smoking a doobie, and finally a bride and groom. Yes! My quota was filled. As was my coffee cup. Fun.

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The other highlight of the trip, outside of all the fantastic food and wine we ate and drank with my in-laws, was the giant Ferris Wheel – the High Roller. This thing is a beast, offering non-stop motion and killer views of the city. Here are my guys enjoying the heights together. Oh! And I nearly forgot the Pinball Museum! Heaven for Corey with row upon row of pinball machines from all different eras, all supporting the Salvation Army.

Overall, it was a wonderful experience as always. Except for Sharknado 2. I survived it, but I don’t recommend it. I recommend all the rest of it, though! Can’t wait for next year.

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My CHD book has been published!

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I wrote a book titled Raising a Heart Child: A Parent’s Guide to Congenital Heart Defects. It is based on Corey’s journey through the world of CHD. It is available in ebook format on Amazon, Barnes & Noble, Apple, FlipKart, and Smashwords, and it will soon be sold on Oyster, Kobo, Blio, and PageFoundry. Here is the introduction:

“There’s something wrong with your baby’s heart.” Those seven simple words changed our lives forever.

We began our journey in the world of congenital heart defects (CHD) when I was twenty weeks pregnant with our first son, Corey. During the standard twenty-week ultrasound, the technician found that one side of our son’s heart was abnormally large.

And so it began. A series of high level ultrasounds, test after test, consultation after consultation with specialist after specialist, all through an endless stream of tears and fear and sadness. A perinatologist who gave us no hope. A pediatric cardiologist, and then another and another, who gave us the ray of light that we needed to hang on.

In medical terms, tricuspid atresia. A single ventricle heart defect, a hypoplastic right heart syndrome. In human terms, a life lived with half a heart. But a life worth living, in every way, if we could accept the challenge and fight for our baby. And so we did.

Corey had his first surgery before he was a month old – the Blalock-Taussig Shunt. The second surgery came at less than six months of age – the Glenn. And finally, the three-stage reconstruction was completed with the Fontan when he was just four years old.

Today Corey has completed third grade. He’s the teacher’s pet. He’s an A student. He plays baseball. Everyone loves this beautiful child who fought his way into the world and then fought his way into all of our hearts.

I don’t know what the future will bring. Tomorrow is a promise to no one. But I do know that every single moment I have had with this amazing little person has been a gift. The present is bright, and I have every reason to hope that the future will be too.

I am not a doctor, and this story is not meant to offer medical advice. Only medical professionals can provide medical advice. But I have lived this story, and these pages offer a firsthand glimpse into the life of a child with CHD, including everything that I have learned along the way. This is the book I wanted when we discovered Corey’s defect. It is a road map of our journey through the world of CHD.

This is Corey’s story. Through it perhaps you can find hope for the child in your life who battles congenital heart defects too. And maybe some small comfort in knowing that you are not alone.

Let’s Go to the Emergency Room!

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A few days ago, the boys (AKA, Team Crazy) decided that we don’t have enough insanity in our lives, and really we needed to make a trip to the emergency room. You see, the boys think “ER” stands for “Excitement Room.”

But let me back up a moment and explain. On Friday morning the weather was nice – a bit overcast and cool for an early August day in Maryland. A good day for an outdoor activity with Team Crazy. Anytime I can get them outside and run them, I do it. We opted to go to Down’s Park, which skirts the Magothy River and the Chesapeake Bay. Sounds lovely, right? And it is. As long as you stay out of the water.

My mother and I packed up the boys and drove off to the park. We arrived, parked near the playground, and the boys played on the equipment for a bit. Corey announced that he wanted to hike down to the beach area, and I, thinking nothing of it, readily agreed. The boys spent about 20-30 minutes playing along the water’s edge, building sandcastles, checking out seashells and bits of rock, and just generally wading about in the water. It was nice.

Until the park ranger approached us and said this, “I don’t mean to scare you, but we’ve had 16 cases of flesh-eating bacteria recently. Nobody should be in the water. If you’ve been in the water and you have open cuts, they’re advising you to go to the hospital.” Guess who had cuts all over his legs from scratching open mosquito bites? Both members of Team Crazy. Panic anyone? Flesh-eating bacteria?! Where were the warning signs?! I’ll tell you where: nowhere at that park or anywhere else I’ve been close to the water. Visions of the news stories showing people losing their limbs to this bacteria flashed through my mind.

So as I started to freak out and calculate my next move without terrifying the boys, the ranger proceeded to tell me that they have a hose attached to one of the nearby buildings, and that I should hose them off immediately. I practically broke into a run, leaving my mother and the boys behind in my fearful quest for that hose. When we all finally reached the hose, I had them strip down to their underwear (I briefly considered just having them streak naked back to the car, but I had no towels with me) and I hosed them down thoroughly. I then decided that, no matter what we did later, the first step was to wash them thoroughly with soap.

I drove home like Cruella Deville chasing down 99 puppies, and on the way I called their father. He suggested I call the pediatrician. I did. The nurse a the pediatrician’s office advised me to take them to the ER, noting that, should they be seen by the doctor, he would likely send us to the ER anyway, as they have more testing capability. We then called my mother-in-law for her opinion as a nurse (and scared the bejesus out of her – sorry, Conni), and she told us to go to the ER too.

Fine. We went home, showered the boys until their skin was nearly raw, covered all their cuts in Neosporin, threw fresh clothes on them (and me, as I was thoroughly soaked at that point), and went to the ER. At the ER, they looked at me like I was a crazy person. And that was without witnessing my bad driving! As in, “Here’s another lunatic parent overreacting.” I explained the situation, but the doctor informed me that there were no tests to order, as both boys were asymptomatic. She did say that we had done the right thing by showering them first (no showers in the ER), and she prescribed topical and oral antibiotics for 5 days as a precaution. This may have been partly because Corey has tricuspid atresia, however. Better safe than sorry with the heart child.

The boys took the entire ordeal in stride. Unlike their mother and grandmothers, they were never scared. They did ask some questions, but mostly they were interested in working the TV remote and making the hospital’s automatic chair go up and down, up and down, up and down. At one point I was getting ready to text our family members to give them an update, and I asked the boys if they had anything to say. They played dead on their favorite automatic chair while I snapped their picture, and they said, “Yeah. Tell them we’re gonna die, but that’s okay because we get to go up and down on this chair.”

Right. It’s all about the chair. See? Excitement room.

The morning after our ordeal the boys greeted me with impy grins and jokes like, “My leg fell off in the middle of the night!” Or, my personal favorite, “Feel my ear. I think it’s loose.” Nice. Any chance to taunt their mother. Luckily they are fine, though, and I am very relieved.

However, I’ve had enough of the excitement room to last a lifetime.